Welcome to the

Phoenix

community

With the help of our communities in cities across the country and beyond, we provide a forum for patients who want to join in the fight to find treatments and cure for PKD.

Connect with us to find out how you can make a difference in the lives of thousands in the U.S. and millions worldwide.

Phoenix Community Meeting

FREEDOM-1 Study & Living Donation

Join the Phoenix Community to learn about a Phase 3 clinical research study of an investigational cell therapy, called FCR001. The purpose of this study is to learn more about whether FCR001 can prevent the rejection of living kidney donor transplant without the need for lifelong anti-rejection drugs. 

Dr. Hasan Khamash will share information about the FREEDOM-1 study, Living Donation and answer our questions.

Watch this video to learn more about the FREEDOM-1 Study

FREEDOM-1: A New Frontier in Living Donor Kidney Transplant

 

Event Details:

Wednesday, May 25, 2022
7–8 p.m.

Video conference link will be emailed upon registration.

Get Involved

Are you interested in helping us grow the Phoenix Community?

We are looking for volunteers to help us offer more opportunities in your local area. If you are interested in this opportunity to volunteer and further our shared vision to #endPKD, please complete our volunteer form and let us know how you would like to get involved.

If you have questions, please email us at volunteers@pkdcure.org.

The 2022 Walk for PKD launches in May. Watch the Walk for PKD webpage for more updates. We look forward to you joining us for an exciting year of fundraising to support PKD research. A cure is our finish line!

The PKD Connect Conference (PKDCON) is an annual event that brings together every part of the PKD community—from patients and caregivers to researchers and physicians—to provide education, research updates, resources, and networking opportunities.

Virtual and free to attend this year, PKDCON 2022 will provide a rich educational experience, meaningful interactions with other participants, and engaging Q&A sessions with faculty.

Join us for our second virtual conference June 24 – 25.

Last year, 1,600 attendees from over 40 countries joined us for our two-day virtual event. Register today to learn alongside PKD community members just like you. Register now!

Now, as always, the PKD Foundation is committed to our mission of giving hope, advocating for patients, and building a community for all impacted by PKD. We'll continue supporting our community by providing important resources and timely updates on social media. If you have questions or need help navigating this unprecedented health crisis, we are here for you. Email or call (844) PKD-HOPE.

If you’re looking for a shoulder to lean on or want to help others from the safety of your home, our Peer Mentor Program is a great resource:

  • Interested in connecting with a mentor? Please take a moment to fill out our mentee survey and our team will follow up with you via email or by phone.
  • Interested in becoming a peer mentor? Please complete our mentor application and a member of our staff will follow up with you by email or by phone.

Dwelyn Williams

Walk for PKD Ambassador

I’m Dwelyn Williams, CCHT, originally from Fayetteville,NC and have lived in the  Phoenix, Arizona area for the past two years. I started my career as a Nephrology Clinical Technician in 2000 because my late mother was diagnosed with Type 2 Diabetes and ESRD.  Since the beginning of my career I have been a Dialysis Technician Traveler. I’ve lived in twenty eight states, and worked in over sixty dialysis clinics. During my career I have had the honor of receiving many awards within the nephrology community, I’ve served  on nephrology committees with NKF and ADCES, and been a Hemodialysis Technician Instructor. with OCPS. In my spare time I wrote a book titled, “ I Don’t Know About This?”( A Patient’s Initial Dialysis Treatment). I am now a proud PKD Peer Ambassador as well as the Phoenix Walk for PKD Ambassador.

Risa Simon

PKD Connect Ambassador

Using her voice to encourage proactive-choice, this fierce patient advocate is elevating patient empowerment opportunities at every turn. Whether she’s speaking, writing, mentoring or volunteering for the PKD Foundation, the National Kidney Foundation or the American Association of Kidney Patients to advocate for better outcomes, her inspirational message touches the hearts of all audiences.

Risa thought her career path in dental practice management was set for life until a force stronger than her master plan came into play. The same genetic kidney disease that took her father’s life in his early 40s (Polycystic Kidney Disease) started to impact the quality of her life. This awareness caused Risa to take a deeper dive from a more proactive point of view.

While exploring new territory, Risa uncovered blind spots in patient education, which included a withholding of essential information and a reluctance to encourage a preemptive kidney transplant as a superior option. These discoveries compelled Risa to morph her talents into creating success strategies for the kidney patient community and that’s exactly what’s she doing.

Today, you can find Risa paying it forward with her heart strapped to her sleeves while serving as the founder and CEO of the TransplantFirst Academy and The Proactive Path. Risa’s vision is straightforward: to motivate fellow kidney patients to fight for their best life possible.

Risa’s patient empowerment programs and motivational books (In Pursuit of a Better Life and Shift Your Fate) continue to inspire kidney patients to become their own best advocate and fight for their best life possible.

Page last updated March 2022

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